A safe haven for children with cancer
The rooftop: A place for therapy
Life was good for this little family of three from Embilipitiya. The father was working in West Asia to keep the home fires burning and the mother was looking after their one-and-only 4+ daughter in Embilipitiya.
That was late December 2021. Now, in May 2023, life has irrevocably taken a different turn, away from the set and planned.
It was a simple fever that hit the daughter, what they thought was due to a virus. However, the child’s recovery was slow and lethargic, unexpected as she was very active, “like a tomboy”.
The diagnosis was blood cancer (leukaemia). Fortunately, it is curable. But the treatment regimen has to be followed to the letter and the end of this malignancy is targeted for 2025.
“Api asarana wuna, maanasikawa, aarthikawa saha hema athinma. Eth karanna puluwan hema dema karanawa apey ekama daruwata,” says the mother, adding that the whole family was badly-affected not only mentally and financially but in all aspects. But they would do everything possible for their only child.
However, life as they have known is over. A more challenging chapter has begun with relocation to Colombo from their home in Embilipitiya a necessity, not only for cancer treatment but also when the child’s blood counts drop or she has got a severe infection. The father, meanwhile, has returned home in desperation and is engaging in delivering food here and there on his motorcycle.
The family has rented a small room and the rent and utility bills come up to around Rs. 20,000 a month.
It is for such desperate and distraught families and also for those who are bereft of hope with the diagnosis that ‘nothing more can be done’ except keeping a child happy that a beacon of succour is about to be shone from three doors away from the Apeksha Hospital (National Cancer Institute), Maharagama.
The beacon is ‘SUWA ARANA – A place for healing’.
Calling it the “most ambitious” of the programmes of the Indira Cancer Trust (ICT), SUWA ARANA’s Coordinator Joan Hyde explains that it is a Paediatric Palliative Care Centre and Paediatric Housing.
It is a collaborative project of the ICT and the Sri Lanka Medical Association of North America Western region. The non-profit ICT was launched by former Speaker of Parliament, Karu Jayasuriya who felt “deeply” that having family around him was the lifeline he needed to cope, while his daughter Indira fought cancer with courage, faith and dignity. It is guided by his other daughter and ICT Chairperson Lanka Dissanayake.
Ms. Hyde points out that Apeksha Hospital being the only paediatric oncology unit in the whole country, children between 0-19 years are sent here from all over.
Currently, if parents who bring their children to Apeksha approach us, we support them to do the genetic test which is performed only in a private hospital, provide nourishment and also transport costs, she says, explaining that often the family of the child has to find accommodation at a cost, close to Apeksha. In many cases, the mother stays with the child and the family back home descends into disarray, with employment issues for the father resulting in abject poverty and disrupting the schooling and welfare of siblings.
She underscores that treatment is long and they have to keep coming back. As such SUWA ARANA, which would be manned by full-time employees as well as volunteers, will provide the patient and carer comfortable accommodation, nourishment, counselling for the child and parents, art therapy, music therapy and play therapy, all free of charge.
“This is a different and unique approach of recovery, to strengthen the children physically and mentally between the in-ward regimens of treatment, while providing a safe place for the carer to let down her hair and other family members peace of mind that the child and carer are in a safe place,” says Ms. Hyde.
Then there are also the ‘Rainbow Rooms’ for end-of-life child-patients, if the parents wish to keep them here, she says, adding that such children would have a dignified, pain-free passing.
All children would be given accommodation on the referral of the Consultant Paediatric Oncologists.
Additional reporting by Dilushi Wijesinghe
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